How GoPI3Ks have helped those living with a PIK3CA mutation.
Since becoming a registered charity at the end of 2017 we have been able to help with the following:
2018
Our first ever grant was made in 2018 & this was to help one of our members with getting a pair of bespoke trousers made. We were happy to be able to help with this as we know how difficult it can be to find that clothes that fit & those that don’t, to have them professionally tailored to suit can be pretty expensive.
For more information onour first family weekend, please see our News Letter December 2018
2019
We were also able to help one of our members with purchasing footwear, shoes & socks from the USA as they are unable to get the size they need in the UK to fit their overgrowth.
In February we were contacted by our member Margaret who had been struggling with her old electric wheelchair that wasn’t working well at all. We were happy to be able to supply her with a brand new electric wheelchair, Margaret was happy to for us to share photos of her using her new chair
2020
In March we were able to help a family in America with the cost of their daughters’ dental care, something their insurance wasn’t able to cover.
“My family and I would like to give GOPI3KS a heartfelt “Thank you!” for donating money towards our daughter’s orthodontic bill. With your help, we are thrilled to announce, that her bill will be paid in full by this time next month! This is a huge weight off our shoulders! It really means a lot to us. Thank you so much!”
In May we had the pleasure of being able to help one of our families who had recently bought a dog.
Pugsley is to become an assistance dog to help their daughter who lives with PROS.
Initially we were able to help with the vaccinations for Pugsley before he started out on his training to become a therapy dog.
In June we were also able to help Pugsley with the start of his training to become a therapy / assistance dog to help one of our young GoPI3Ks members.
Here is Pugsley as he starts his training to become helpful to his little human owner.
In August we were able to help one of our members who needed to purchase two pairs of trousers from America that are bigger in size.
Subsequently we were then able to help with the payment to alter the 2 pairs to be made in to one pair of trousers to accommodate the overgrowth in his low limbs.
In August one of our younger members underwent an operation, but due to Covid-19 the family were only allowed to travel by car to the hospital.
This meant facing the cost of parking as well as congestion charges. GoPI3Ks was able to help with these.
In October we were contacted by Meggie’s mum as Meg had recently undergone an operation on her leg. This meant a long road of recovery ahead of her with no guarantee she would still be able to dance.
GoPI3Ks were able to help by paying for specialised physio & so far Meg is definitely on the road to making a full recovery.
We asked Meggie why she loves dancing so much:
“I love dancing because you can express yourself in a way that everyone will understand without using any words. I can lose myself and just enjoy the feeling of freedom. All your problems go away, it’s just you and dancing”.
2021
In May 2021 we received an
application to help one of our
members who had to take her little
boy to a London hospital for some
tests. However, this can prove very
expensive with the cost of petrol and
the congestion charge. So GoPI3Ks
were happy to help with this for the
family.
In July we were contacted by Jess who was really struggling to safely ride her horse Blue
From Jess:
Being born with several rare conditions has made life challenging in more ways than one, my life has been full of ups and downs with over 300 hospital admissions and surgeries which is still on going. I’ve always had a passion for horses, at the age of 39 my mum and dad purchased my first horse for me, he was a rescue and was still a stallion, but the bond between us was there, now gelded and with all the hard work we’ve put in, we are definitely a fantastic duo, Being disabled, funds are tight, I’m lucky to have a wonderful yard owner and husband who helps on the day to day upkeep, however saddles have been a bit of an issue, due to (PROS) Pik3ca related overgrowth spectrum my balance and leg stability in a saddle wasn’t great. I’d heard of chunky monkey Saddles who specialised in para riding saddles but unfortunately it was way out of my budget. I approached the GoPI3Ks charity and asked for their help. My application was awarded and after a consultation with Sam at Chunky Monkey she knew exactly what I wanted and needed.
We are now the proud owner of a brand new saddle and what a difference it has made not only to my riding and stability but also for Blue my horse The saddle that Sam has made me is the most comfortable and helps get me in the best position possible. My saddler Samantha Rhodes did a fantastic job at measuring Blue out, so it also is the best fit for him. She really took the time to analyse me when I rode and then to liaise with Sam about what we needed. They were so helpful to do whatever we needed, and the saddle is just perfect. I have Front and back knee and thigh blocks to help stop my legs from bouncing off the saddle, but it also helps to keep my hips and legs in the correct position. My balance is so much better which is great for both me and Blue as I’m not bouncing about on his back causing pain and other issues, the saddle is a perfect fit for us both. I can’t thank the people who made this happen enough, it really is a game changer, so much so I can now plan away events, we are aiming to enter para rider dressage next year!
2022
As the cost of living rises we were happy that we were able to help one of our families by giving them a grant for £1,000 to help with their energy bills.
One of our families had their holiday cancelled due to Covid. They received a voucher to book another trip, but this wasn’t enough to cover a “once in a
lifetime” holiday. So GoPI3Ks were happy to pay the £597 that they needed to secure their holiday.
We were also able to pay for £392 for accommodation for one of our younger PROS members, so she could take part in a short documentary focusing on how disabled people are represented & treated in todays’ society. This also gave her a chance to spend time with other young people with rare conditions, helping her to feel more included & accepted.
Meg said “I feel so lucky to have had thisexperience, it was a total dream
come true! It was so lovely to meet other people with different conditions
and to celebrate it and create awareness. I made some friends for
life and found a huge love for acting and film. Thank you for making this
possible for me!”
We were able to also help one of our younger PROS members. With overgrowth of the lower limbs & feet, it can mean that families need to buy 2 pairs of shoes/trainers to fit comfortably. We were more than happy to help
